I found these beautiful words on a website today as I was doing some research for our family. Oh the change in my daily routine! Who would've ever thought a couple of years ago when we were doing this...

and this...

and this...

and this...

and this...

that today I would find myself on the Houston Hospice website reading about their Butterfly program and all the services they have for children and families dealing with the life of a child with a terminal illness and the care they provide during for the child and family as well as afterward? Is life not the craziest thing?
When I
One of the gifts we received recently came in this gift bag.
It reminds me of Emma. One day she'll be free from all the pain, frustration and confusion of Batten Disease. Until then, I'm so glad we have family and friends who are loving us through each step of the way...